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Ink Slingers Martina

Vitiligo & Me

Vitiligo&Me Shortly after my 35th birthday three years ago, I started to notice a rapid change in my hands. But, let me back up a bit and explain another event that seemed inconsequential. I used to have this cute little scar on my thumb knuckle. I would stare at it on occasion. It was an itty bitty white patch of skin that’s not uncommon to scarring. I remember casually joking to myself “oh, I’m going to get that Michael Jackson disease,” shrugging it off and moving on.

oh, how I wish I had known not to joke – not that that would have made a difference…::sigh::

In a matter of a few short months, my hands deteriorated and lost pigment. In the back of my mind, I had a feeling I knew what it was, but I refused to give it a name – naming it means dealing with it, and I was stuck in this panicked, do-nothing, stick-your-head-in-the-sand mode to my own undoing. I researched a lot online and all signs pointed to…vitiligo. The lovely disease that

is NOT contagious

has no cure

doctors do not have definitive answers as to what causes it

is possibly inherited

is made worse by stress.

STRESS.

STRESS!!!

Just after our then annual trip to visit family in Virginia, I finally made an appointment to see a dermatologist so that she could rule out vitiligo and put my mind to rest. That didn’t happen. She confirmed my worst fears. Oh great, I remember thinking to myself. I get to be that person who everyone will stare at, wonder if they’re going to “catch it” – whatever it is that they think I have, and learn to live in seclusion. Not a bad idea considering I can easily get everything I need off the internet. Did I mention this happened just after I had accepted the chairperson role for our parish pastoral council? I wasn’t in a position to just ditch that responsibility – fortunately, my sense of obligation outweighed the perpetual feelings of helplessness as I started down the road of accepting this new diagnosis. The timeline went like this – birthday in April, noticed spots in May, rapid spreading of white spots through July, left to visit family in VA in August, came back to dermatologist and confirmed diagnosis on August 16. August 17 late evening – start Catholic Sistas due to several reasons, but the timing worked out that I needed that perfect distraction to combat the diagnosis. And, so it would happen that this blog was a lifesaver of sorts. It provided me the opportunity to use my hands in a way that would hopefully build up the Kingdom, but it wasn’t a way to numb the pain. I pulled back from my activities at church. Deep down I knew the healthy-minded thing to do was to grieve the diagnosis and wrap my head around what my future would look like.

A diagnosis of vitiligo carries with it the risk of other autoimmune diseases such as

hyperthyroidism,

adrenocortical insufficiency,

alopecia areata,

and pernicious anemia.

I was blessed with an amazing sense of self-worth and rarely do I care {much} what other people think of me. I’d like to be able to tell you that I was able to shrug all this off and put on my I don’t care what you think eyes. That wasn’t the case for me. I will start by saying I was already involved in our parish life and in many ministries, with many local friends. Were it not for that, the following would have been much much more difficult to deal with.

I fell into a really dark place for a while. I was glad for and blessed by the opportunity to manage Catholic Sistas as well as my monthly meetings on the Pastoral Council and all the responsibilities that came with that. I knew deep down that I wouldn’t be able to escape grieving things and I did allow myself to do just that. I spent a great deal of time reflecting upon {sometimes literally in the reflection of the mirror} vanity, women, women & vanity, and what our ultimate worth is in His eyes. Logically, this was a no brainer. And those were the times when I felt like I was just indulging in a pity party. I know I am beautiful in God’s eyes. I am the apple of His eye. So, why do I feel such despair? WHY do I care so much about what other people might think or if they would like me less because of something that is completely and utterly out of my control?

I wish my greatest concern was simple vanity – wrinkles, gray hair, etc. As I near 40, I can start to justify those complaints. When you lose your pigment, there’s really nothing you can blame it on. Or pinpoint its beginnings – or scream at. You just have to suck it up and accept it.

And that? THAT is hard.

I go back and forth between am I just being vain? and no, you are legitimately & justifiably emotional here – let it all out, Girl. I also struggled with the I don’t deserve to grieve over this because I’m not dying and there are worse things that could have happened. Yes, that’s true. But had I listened to that voice, I would have robbed myself the opportunity right to grieve, and grieve thoroughly at that.

After seven months of treatment at the dermatologist using UVB light therapy, I noticed the spreading slowed. Between my insurance dropping coverage and also finding out we were moving on a whim, I stopped my appointments. To date, I have not gone back and the spreading has gone from stopped to slowly starting up again.

And I find myself going round and round with bouts of stress…knowing full well how this cycle goes. Stress, grieve, get over it, rinse & repeat.

Were it not for finding out that a fellow parishioner lived with vitiligo – a woman and Mexican American as well! – I don’t think I could have overcome my grief as quickly as I did. She did not allow me to have a pity party, but allowed me to vent about my situation. She understood. She lived with it through her teenage years. She opted to depigment all of her skin and I always think about how beautiful she is. I think to myself if that’s what I have to look forward to, then call me the Mexican Snow White, please!

It’s not the being without pigment part that bothers me – it’s the transition.

I share this with you for many reasons, most of which have been that nagging Holy Spirit voice in the back of my mind telling me that it would be good to put out there, once and for all. I flat out rejected the idea of sharing it, but sometimes the advice I give others has to be the advice I myself am willing to take as well. The truth is that sharing can be cathartic. It can be a means of freeing oneself from the burden of carrying around baggage. For the most part, the timing of the creation of the blog has been the biggest blessing. It has helped me focus on what’s truly most important – not myself, and not easy. I find when I have too much free time, my mind will wander in the direction of questions that have no answers…and that always leads to stress. So, I keep myself happily and continually busy – with my home, my husband, my family, our homeschooling, parish life, and the blog and all that come with each.

Though it has taken some getting used to, and to some extent I give it credit for realigning my life in ways {I was able to get blood work done that confirmed I was ridiculously deficient in Vitamin D and start taking mega doses so I could function}, I still have not yet identified with it as something that is part of me. It’s not something I will bust out talking about in casual conversation, but I am learning to finally just admit that it’s there, instead of the {white} elephant in the room. I’m putting it out there because I know there are others out there who live with it and I would also love to connect with. It’s time to deal with it head on instead of pretending it doesn’t exist.

So, friends , if you would please add me to your prayer list – for continued peace of mind, for acceptance and surrender to His will in all of this, I would greatly appreciate it. If anyone reading this happens to know of a doctor or specialist who is making groundbreaking discoveries in treatment, I would also love to know. I am constantly reading up on the latest treatments and know of at least one doctor in Germany who is making huge strides in treatment, but I know it helps to have others looking as well.

By Martina Kreitzer

Martina is a cradle Catholic, wife to Neil, and mother to eight kiddos here {and three in heaven}– 4/96-12/19. She decided to homeschool the kiddos in 2010 after many years in public schools and is currently transitioning out of homeschooling. She is the creator of Catholic Sistas which focuses on a feminine perspective of the Catholic Faith. The website was the result of an existing camaraderie by the contributors in a Catholic women’s group she created. She is also a Seal of Approval evaluator for the Catholic Writers Guild. Lest you think she spends all her time online, Martina has enjoyed getting out into the community by serving on the Pastoral Council from 2010-2013. She is constantly on the lookout to make her parish as welcoming as the small town she grew up in East Texas. This task is not easy given that St. William is the largest parish in the Austin diocese, serving well over twenty thousand parishioners. She loves Jesus, coffee, bacon, chocolate, photography, more bacon, evangelizing, and the company of those unafraid to use their sense of humor.

10 replies on “Vitiligo & Me”

Well done my friend. Proud of you. There are always people out there with what seems *bigger stuff* than ours, but that doesn’t mean we ignore ours and don’t have emotions about it. I’m glad to see you working through them and using your voice in a way that may help others work through theirs.

I know you have heard this, but for others who might be reading….my 9 year old Jax doesn’t have vitiligo, but severe eczema, which often causes sores easily viewable, his mouth most often. He has lived with it for so long, he will notice other kids staring, or God love them, they just ask…hey what’s that? And he answers…don’t worry it’s just eczema, my skin sucks…and he laughs. Then they run off to play.

I often look at these kids and feel they are light years beyond us. He is entering the years where it gets more complicated, and I hope he will maintain his outlook through the rough years. But up til now….it’s been inspiring to watch.

They are okay with telling people about themselves, they are okay with being asked about themselves, they are okay asking about others and they accept the answers to so openly…

This is my prayer for you, all who suffer from outward appearances that make life challenging…and all those who don’t. That we can become as accepting, understanding and informed about ourselves and others… as little children. It would truly make the world a better place.

Hi Martina – I’m Kim’s mom – I also have Vitiligo! Mine didn’t start until between 40 and 45 – just small dots on my hands at first, then started losing the pigment around my eyes almost like I wore big sunglasses all the time. Now most of the pigment is gone on my hands, but not in an all over pattern. It depends on the mood I’m in and the person that is asking, but sometimes when asked what “happened” to my hands I say “I use a lot of bleach when I clean” after I laugh and they don’t know what to do, I’ll tell them what it is. I love it when kids ask – it’s an opportunity to tell them how different we all are in some ways and it’s an educational moment for the child and the embarrassed parent. Maybe because mine was gradual, I have not had that upsetting time that so many patients have. (Yes we are patients – it’s an autoimmune disease!) I’m on a couple of Vitiligo sites and maybe I don’t feel so bad because I see people of color and children that are so badly affected – it minimizes mine for me. We all handle things differently, so feel free to grieve some and then try to move on. Grieving won’t bring the color back, but it will help to get it out of your system. Feel free to contact me. God Bless!

Hi-Thank you so much for writing this article!! I, too, have vitiligo as does my Dad. It was very informative to read. Thus far, it is primarily on my hands. I have not been to a dermatologist yet. Thanks, again. I learned a lot!

About 15 years ago I had a white spot on my face that itched and began to grow. My Dermatologist said it was Vitiligo. Here is my history. In college I used to drink a lot, as a result my doctor used to ask if I drank after I stopped drinking two years prior.(My liver enzyme count was high). At this point I began to take an aspirin a day( fearing family history of diabetes). So, I received prayer from fellow believers, stopped taking my daily aspirin and took some Cal/Mag tablets from and old Multi-level marketing company. About 6 months later the spot began to shrink and is now gone.

Jake,

It’s interesting that it stopped with just Cal/Mag tablets. I’ve been trying a multitude of things – the common theme I’ve found in reading online of others’ stories is that what works for one person, I will find another story that that same solution doesn’t work for them.

Martina,
I am a 55 year old female and have had Vitiligo since I was 23 years old. I too remember having a white dot on one of my knuckles for a long time and also thought it was a scare. Until the summer after I graduated from college I noticed a dime size white patch on my right eye lid.
I too went through a difficult time while my pigment disappeared. Wearing long sleeves, not going to activities. etc, etc. We all do the same silly things.
I can now go out in public with short sleeves and when people stare I just stare back and smile.
I had a little girl ask me the other day what was wrong with my legs and I just told her that my tan part of my skin was going away. No big deal. She said Oh…and offered me one of her donuts she was holding. Her Mom was mortified and I told her I would rather people ask me what I have than just stare. And than of course offer me a donuts. She laughed and agreed.
My vitiligo has progressed to petty much everywhere on my body and I will not lie, it is hard to live with.
But, God gave me this for a reason. And I have to accept it.
I pray that some day there is a cure and pray for all who are dealing with this condition.
God Bless,
Rosalie Lowe

Rosalie,

Thanks for your comments. Well, thanks to everyone who responded. Shortly after, we left to go on vacation and communication was more of a challenge on the road. 🙂

It *is* hard, and a lot of it is keeping an eye on how to cope and when to cope and how does my coping affect everyone around me. It’s this perpetual balancing act. But God is good. 🙂

Martina,

You mention love of Bacon… . And living in Austin… . And you are a hilarious, down to earth, passionate writer. Are you by chance Paleo? (I ask that as though it were a label or a box you could check as a background listed on your tax form, HAH!).

You mentioned being flooded with tales of what works and what doesn’t and that the only thread that brings them all together seems to be that everyone is an individual and that bodies respond so very differently.

But you also highlighted the additional risks to watch for that can accompany a diagnosis of Vitiligo.

Another thread that runs through both of these observations is the underlying impact of the body operating under a constant state of Inflammation. One of the surprising effects proclaimed by so many people who have dabbled with the revolutionary (yet very back to basics) Paleo way of eating – has been the calming of a HOST of symptoms and diseases caused by inflammation. Even when they intended simply to eat healthier or lose weight.

Many are surprised by the calming of their skin, aches, moods, fertility, MS affects (my sister-in-law!!!) and other mild or debilitating battles.

Including halting vitiligo!

If any of you can stand yet One More helpful stranger’s suggestion: please surf “Paleo” and examine the energizing, inspiring, and just joyful testimonies by regular folks and physicians and researchers who are living this lifestyle. Not a fad! More and more science is supporting the potential for us to heal with (against the norm) food, sleep, moving around, and sunshine.

God bless!

Katherine

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